*     The cost to register and fundraise is only $25 and requires a minimum fundraising commitment of $250 (You will receive an event cycling jersey)

Gators, As many of you know from seeing our Avery out at events and on her adaptive bike our daughter has a disabling disease. On June 8th, 2019 we have an amazing opportunity to raise vital funds to support Avery and other children with a rare disease. If you don't know Avery was diagnosed with CDKL5 when she was just 4 months old. CDKL5 deficiency disorder is a rare neurodevelopmental disease caused by mutations in the CDKL5 gene, which can manifest in a broad range of clinical symptoms and severity, though the hallmarks are early onset, intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech and visual function. Although rare, the occurrence is now believed to be 1:60,000 live births, and they are discovering more and more cases of this disease than previously being diagnosed. My Wife and I will be leading a team for Penn Medicine’s Million Dollar Bike Ride (MDBR) in Philadelphia on Saturday, June 8th in order to raise money for CDKL5 research. All (100%) of registration and fundraising will go towards grants to fund research specific to CDKL5. We have volunteered to be the local team captains to recruit riders and volunteers. Last year’s Million Dollar Bike Ride was a huge success for Team CDKL5 Riding for a Cure. With the help of IFCR (International Foundation for CDKL5 Research) we raised the maximum donation amount of $50,000 that was then matched by the Center for Rare Diseases. That’s $100,000 that funded 2 pivotal pilot grants for the CDKL5 Program of Excellence. One of the grants is funding research to duplicate the CDKL5 mutation in a species of zebrafish in order to better analyze the protein function. The other grant we funded is evaluating pupil size as a biomarker to access future and possible treatments. This work is being done because of your generosity. In order to reach our goal, receive the matching funds, and maintain participation we need a minimum of 15 riders and must raise at least $20,000. Please help us reach our goals again this year so we can continue to fund the research that will eventually lead us to a cure. We are once again asking for help and here is how: 1. Join “Team CDKL5 Riding for a Cure” with fundraising: * The ride includes three distance options... 13 miles (413 feet elevation gain), 34 miles (1,539 feet elevation gain), and 72 miles (3,658 feet elevation gain). We also do a custom 50 miler as well that isn’t posted and I can tell you how. * The cost to register and fundraise is only $25 and requires a minimum fundraising commitment of $250 (You will receive an event cycling jersey) 1. Join “Team CDKL5 Riding for a Cure” Ride only. * Registration fee is $80 starting 4/1, and $100 the day of (you will receive a t-shirt) * http://www.milliondollarbikeride.org/2019-cyclist-registration/ 2. Donate to support Avery and Team CDKL5 by following the link below: * https://socialfundraising.apps.upenn.edu/socialFundraising/jsp/fast.do?fastButtonId=T4BXDFJX&CID=105803115 * Or if possible by check. All donations via check for the Million Dollar Bike Ride should be made payable to: * Trustees of the University of Pennsylvania Penn Medicine Development and Alumni Relations 3535 Market Street, Suite 750 Philadelphia, PA 19104 * Write “For Team CDKL5” in the memo line We truly thank all the Gators who are currently signed up and have participated in the past. We appreciate everyone for reading this email and considering helping our sweet Avery. Brian and Kristin Kozera